Reflections of an Alzheimer's Spouse ... Allan S. Vann

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Friday, May 4, 2018

When my wife was diagnosed with Alzheimer's disease (AD), I
joined a caregiver support group exclusively for AD spouses. Everyone in my
group, expertly led by an outstanding social worker, was dealing with similar
issues. We were all caring for spouses who were slowly dying of AD. We
discussed our feelings and shared our concerns, receiving emotional support as
well as helpful suggestions from the social worker and other members in our
group. Our spouses were at different stages of AD, and the major daily
caregiver stressors were different for each of us. But despite these
differences, whenever one spouse voiced a fear or concern, heads nodded in
silence. When that person had finished, others commented aloud. Everyone in our
group easily related to what others in our group were saying. We were all AD
spouse caregivers. We all "got it."

My wife passed away in 2016 after her 10-year battle with
AD. It would have been helpful for me to be able to join a different type of AD
spouse support group at that time—one exclusively for AD widows and widowers.
Such a group could have provided me with continued emotional support and helpful
suggestions from others who were experiencing a similar grieving process.
However, I could not find any support groups specifically for AD spouse widows
and widowers at that time.

I conducted a thorough search, but I was unable to find even
one support group specifically for AD widows and widowers anywhere in my
vicinity (Long Island). The New York State Health Department estimates that
more than 400,000 residents of New York have AD, with about 50,000 or more
living on Long Island. Yet even with such a large population of people with AD,
no support groups existed on Long Island in 2016 to specifically help AD spouse
widows and widowers deal with their bereavement.

Fortunately, I have come a long way in moving on with the
rest of my life since my wife passed away, but I also know that I still have a
way to go. However, a 2018 Google search continued to reveal no bereavement
support group anywhere on Long Island that is specifically for AD widows and
widowers. And that is a shame.

To their collective credit, during this past decade both the
Long Island Alzheimer's Foundation and the Long Island branch of the
Alzheimer's Association have increased the number of support groups devoted to
AD caregivers, including specific groups exclusively for AD spouse caregivers.
Several Long Island hospitals, assisted living facilities, and nursing homes
also now provide or host caregiver support groups for AD spouses. This growth
in AD spouse support groups is admirable.

But, still, there are no specific support groups to assist
AD spouses after their loved ones have passed on and their caregiving days are
over ... and this needs to change.

"Generic" support groups for widows and widowers
can be very helpful to many widows and widowers. But in the generic
widow/widower's support group I joined shortly after my wife died, my
experiences of many years as an AD spouse caregiver did not resonate with
others in my group. The other widows and widowers could simply not relate to my
experiences as a long-term caregiver over a 10-year period.

Widowed AD spouses have survived an experience that is
different from most other widowed spouses. Widows and widowers grieving after
the sudden and unexpected death of a spouse, or after the death of a spouse who
had poor health for several months or even a few years prior to death, have
gone through an experience quite different than that of a grieving AD spouse.
AD widows and widowers have often been grieving for five or 10 years prior to
their loved one's actual death. AD spouses have often watched their loved ones
decline and suffer for many years due to this horribly debilitating and
degenerative disease for which there is no effective means of treatment or
cure.

Caring for loved ones slowly but surely losing their
cognitive skills, losing their memories, losing the ability to feed or clothe
themselves, losing the ability to clean or toilet themselves, losing the
ability to walk or talk—these experiences over many years are intensely
emotionally painful. Many AD spouse caregivers have also had to deal with
dramatic personality changes in their loved ones that often cause some to act
aggressively towards them, only adding to their intense emotional pain.

In a generic support group, members may be able to easily
recall and speak about loving memories of the many "good times"
shared with their recently deceased spouses. But even such a simple task may be
hard for AD spouses, who may have to think back 10 or 15 years to recall
pleasant memories of happier times. For many AD spouses, the stress of daily caregiving
over so many years may flood their minds with so many images of the bad times
that images of those good times may not be so easy to recall.

Even though it has been two years since my wife died, when I
close my eyes I see her sitting slumped over in a wheelchair in a nursing home,
not as the vibrant woman she once was. I see her as frail, unable to walk,
unable to swallow food, unwilling to even want to continue to live. I see a
woman who no longer recognized who I was, who had no concept that we were
married, and no longer knew my name or that I was her husband. These are
horrible memories to have, and the other members of my generic support group
for widows and widowers could not relate to this at all.

Our country's population is continuing to age, and the
number of people with AD is continuing to grow. Hopefully there will eventually
be recognition by organizations working with AD caregivers that there is a need
for support groups that specifically meet the needs of AD widows and widowers.

Most support groups are facilitated by social workers.
Perhaps greater awareness and recognition by social workers of the need for
targeted support groups for AD widows and widowers can help make such groups
happen sooner rather than later.

— Allan S. Vann, EdD, MS, is a retired public school
principal writing to advocate for increased awareness of Alzheimer's disease
and to stimulate greater research funding, improve diagnosis and treatment for
people with Alzheimer's, and enhance the lives of fellow caregivers.

Access online only at
http://www.socialworktoday.com/news/pp_050318.shtml

Wednesday, April 25, 2018

All long-term care (LTC) institutional caregivers should seek to work
closely with family caregivers/ advocates to further what should be a common
dual mission: to provide the best possible care for each resident while making
life easier for their caregivers/advocates. One way to accomplish this mission
is for LTC administrators to place themselves in the shoes of concerned
caregivers/advocates.

How does one do that? As a former caregiver/advocate for my late wife, an
Alzheimer disease (AD) resident in lockdown units in both an assisted living
facility (ALF) and a nursing home for 3 years, I would suggest simply asking
caregivers and advocates for their opinions.

In those 3 years, never once was I asked this simple question: what can our
facility do to improve upon how we are providing care for your loved one, and
what can we do to make life easier for you? In other words, what can we
do make our facility more resident- and caregiver-friendly? Not shy by nature,
I offered my suggestions even though I was never asked! At a certain point, I
requested bi-weekly meetings with the chief administrator to discuss my
concerns. Usually the follow-up was very good because the administrator,
familiar with my published writing, feared I was going to write an article for
publication detailing the problems at that facility! But I discovered that some
caregivers/advocates refrain from voicing opinions and suggestions for change due
to fear of “adverse treatment” of their loved ones if they complained.

Dementia residents often may be unable to provide valuable feedback, but
their caregivers/advocates can do so, either through written survey forms or
through scheduled occasional meetings with administrators.

When I was a classroom teacher, I asked my students to complete a “report
card” on me at the end of each school year. Names were optional; most questions
were simple ratings, but some questions were open ended. Later on, when I worked
as a principal, I also asked all of my teachers to complete a “report card” on
me at the end of each year. ​Such feedback was extremely valuable, leading to
improvement in either my teaching plans or administrative policies. I would
suggest that LTC administrators also seek feedback from their
caregiver/advocates.

What kind of feedback? I would divide such feedback into 2 categories:
general and specific. Generic categories would include many of the same
items included on the checklist* I used when initially checking out ALFs. Not
all of those checklist items would be appropriate for a survey after
admittance, but feedback on many of those items would be valuable.

Generic categories on my checklist included ratings or comments on items
such as:

But there were many more categories. With my personal caregiver/advocate
experience, I can think of other generic questions to ask about availability of
visitor parking, special dining facilities for caregivers/advocates to use for
a resident birthday party, etc.

Specific categories would be about issues that LTC administrators may only
be able to learn about with feedback from caregivers/advocates. Perhaps the
best way to obtain such specific feedback is to simply ask one question:

Are there any policies and practices which you
feel can be improved upon to provide better care for residents and/or make
life easier for caregiver/advocates?

Had I ever been asked this question, I would have responded with such
questions as:

Why do caregiver/advocates coming to visit their
loved ones in your lockdown dementia unit sometimes have to wait several
minutes before someone unlocks the door?

Would providing remote openers to unit personnel
be helpful, so when a caregiver presses a buzzer to enter, personnel
occupied with other residents could simply click on their remote
opener?

Could you provide a key code pad by the locked
unit entrance with the code posted to allow caregivers/advocates to open
locked doors by themselves?

Why doesn’t your parking lot snow removal
contract result in more frequent periodic snow removals in a timely
manner, so caregiver/advocates have available safe places to park, and
walk, when coming to visit their loved ones on a snowy day?

Why is the music volume on lounge speakers so
loud that it disturbs caregivers meeting there with loved ones? Can
separate lounge volume controls be installed?

Why are outside chairs, tables, and benches not
cleaned periodically each day of bird droppings and pollen? Why aren’t
seat cushions on wrought iron chairs set out each morning unless it is
raining, or bad weather is imminent?

Your facility has a special lounge where snacks,
coffee, and juice are available to residents and visiting
caregivers/advocates, but juice and coffee machines do not seem to be
replenished periodically on a regular schedule or fixed quickly if
reported as broken. Why?

Any LTC facility can be improved if suggestions for improvement are sought
from the caregivers/advocates who visit their loved ones—the ones who are
intimately acquainted with the services provided and personnel. In addition to
possible facility improvement due to evaluative feedback, administrators may
also see more referrals from clients who appreciate the fact that their feedback
was valued.

Dr Vann writes a monthly Commentary
blog column for the Annals of
Long-Term Care journal,
one of the brands housed on the Managed Health
Care Connect website. He has also written
frequently for caregiver magazines, other medical journals, and major
newspapers. After his wife, Clare, was diagnosed with early onset Alzheimer’s
disease, Dr Vann made it a point to increase public awareness of Alzheimer’s
and to help fellow caregivers. You can read more than 90 of his other
articles about Alzheimer's at www.allansvann.blogspot.com.
If you would like Dr Vann to respond to questions or comments about this
article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, April 25, 2018. Access online only only at https://www.managedhealthcareconnect.com/blog/making-ltc-facilities-more-resident-and-caregiver-friendly

Tuesday, April 24, 2018

The opening paragraph of the AGS Viewpoint article1
in the September/October 2017 issue of Annals of Long-Term Care: Clinical
Care and Aging® states, “Four national medical societies and
nine leading health systems recently announced that they have established a new
national Geriatric Emergency Department Collaborative (GEDC) to help improve
emergency care for our nation’s older adults.” Toward the end of that article,
the American Geriatrics Society (AGS) notes, “The GEDC will continue to add
more health centers and partners, contributing to an alliance of national
stakeholders who will help promote national adoption of geriatric emergency care
best practices.”

This is wonderful news,
but I see no mention of the GEDC’s real stakeholders: geriatric patients. To
improve hospital emergency department (ED) practices for older adults, the GEDC
may want to consult with those who have been in EDs, such as those caring for
and speaking for older adults. And with the rapidly increasing number of older
adults, who are also living longer with Alzheimer disease (AD) dementia,
special attention is needed for this population. The GEDC should consult with
current and former caregivers of persons with dementia who have direct
experience with ED practices and often serve as patients’ spokespersons. As a
former AD caregiver whose late wife was a patient in several EDs, I would
suggest the following:

Treat patients with AD as a higher triage priority.

Some of my wife’s
ED visits lasted more than 9 hours. She would begin sundowning as time went on
and became increasingly confused, anxious, and aggressive. I continued to
remind ED personnel that my wife had not eaten or taken her anti-anxiety
medication in many hours, but each time I received the same response: “Until
her test results are analyzed by the doctors, she may not eat or take any
medication.” That would have been fine had she been a high priority, but she was
a low priority.

On too many ED visits, my
wife sat there for well over an hour just waiting for blood to be drawn then
had to wait as long as 2 hours for doctors to analyze the blood work. It was
the same with radiographs or other testing—long waits for tests and long waits
for results. During all of this time, I served as a human bed restraint to keep
my wife on the gurney.

I understand the wisdom of
ED policies dictating withholding a patient’s medication and food until testing
has been completed. However, withholding anxiety medication and food for 9
hours or more for a patient with AD is, in my opinion, almost medical
malpractice. My wife was screaming louder and louder, repeatedly ripping
painful IV needles out of her arm, constantly trying to get up, trying to
remove her uncomfortable diaper, and refusing to use a bedpan and soiling her
clothing. We waited and waited for tests to be ordered or analyzed so that she
could be admitted or discharged. Only afterward would she be given medication
and food.

Direct all questions to the
caregiver.

If a caregiver is present whenever a person with AD
comes into the ED, directing medically specific questions to the caregiver
rather than the patient is much more helpful. Often, I would tell medical staff
that my wife had moderate- or late-stage AD and that I was her caregiver, yet
doctors continued to ignore me while wasting valuable time asking my wife
questions she could not possibly understand or answer. Asking patients for
reliable information is fruitless if they are in the moderate or severe stages
of AD. In addition, I was completely familiar with my wife’s medication, her
medical history, etc, but too often I was told in no uncertain terms to remain
quiet.

Asking my wife what part
of her body hurt, or to describe her pain on a 1 to 10 scale, was both
ridiculous and fruitless. I told doctors that she did not understand anything
they were saying to her, but doctors continued asking her one question after
another. Doctors should consider simply placing their hands gently on different
parts of the patient’s body; the patient with AD will usually let the doctor
know very clearly where it hurts.

Provide dementia training for all doctors, nurses, and medical
technicians.

As the number of older adults with dementia grows,
supplemental training on dementia care for all ED providers would allow them to
better understand how a person with AD experiences the ED. Because of her AD
symptoms, my wife was thoroughly confused well before arriving in the ED, but
once she got there she became even more confused and also fearful. She was in a
totally unfamiliar setting with strangers asking her questions she did not
understand and saying things she could not comprehend. She was quickly
undressed by a total stranger, even her absorbent underwear were removed, and
she was placed in a diaper and paper gown. That bothered her tremendously. Then
she was forced to lie down on an uncomfortable gurney, stare at extremely
bright overhead lights, listen to very loud and strange machine sounds, and
watch strangers walking all around her and poking her all over while needles
were painfully placed in her arms. Her chronic back pain made her very
uncomfortable on that hard gurney. The combination of all of these
environmental factors made her terrified, and she began screaming and crying.

I would be willing to bet
that if the GEDC approached such national organizations as the Alzheimer’s
Association or the Alzheimer’s Foundation of America, these organizations would
be able to design a program and provide knowledgeable staff to bring effective
in-service training to medical personnel. A 2010 study on hospitals’ approach
to patients with dementia, “Dementia-Friendly Hospitals: Care Not Crisis,”2
supported in part by a grant from the National Institutes of Health, noted that
“The greatest unmet need was in-service training to increase the staff’s
understanding of dementia and strategies to improve the hospital environment
for the patient with dementia.” The study found that staff themselves recognized
that they needed to improve their communication skills with patients with
dementia.

Current and former AD
caregivers can provide valuable insights based on experiences with their loved
ones and patients in EDs. I am so pleased to read that the GEDC hopes to
improve current practices for AD patients in hospital EDs. To truly gain a
better understanding of how current practices may be improved, however, GEDC
should ask for suggestions from AD caregivers who have dealt with or are
dealing with current ED practices. Current and former AD caregivers can provide
valuable insights based on their actual experiences with their loved ones in
hospital EDs, offering a unique perspective that cannot be gained from anyone
else.

A response from the Geriatric Emergency Department
Collaborative (GEDC)

As leaders and
interprofessional advisors for the GEDC, we commend the author for reinforcing
one of the hallmarks of geriatrics expertise and of the GEDC: a
person-centered approach to care.1,2 The GEDC aspires to improve the
process and outcomes of older adult emergency care in addition to the patient
and caregiver experiences of care. As the author rightly notes, that includes
forging a better sensitivity for older adults and caregivers with unique needs,
ensuring that caregivers are included in care planning in the ED and beyond,
and building a better system for training health care professionals in best
practices for a range of older patients and caregivers, particularly those
living with AD.

People living with dementia
are among the most vulnerable individuals in emergencies. Their experiences
represent a litmus test for creating efficient and compassionate health care
systems. If high-quality care can be delivered to people living with dementia
and their families during times of acute illness or injury, access to efficient
ED care will improve for all populations. Importantly, geriatric emergency
medicine had to learn to crawl before walking, which means the specialty needed
first to acknowledge that, historically, dementia was usually unrecognized
because case findings were rare and screening instruments untested.3,4
Of course, screening is unnecessary when family members inform providers of a
person’s dementia diagnosis and baseline cognitive capacity.

As part of the GEDC
infrastructure, we established a Geriatric Emergency Medicine Advisory Council
earlier this year not only to lay the framework for our plans with initial
health system partners, but also to help shape a broader alliance of
stakeholders to promote improved emergency care for us all as we age. The voice
and perspective of the patient are contributed by stakeholder organizations
such as Patient and Family Centered Care Partners, which is active and essential
in our work. Caregivers and patients have presented their experiences at GEDC
conferences and boot camps through speaker panels, video testimonies, and case
discussions. We need this representation to ensure that our best practices
reflect the lives (both real and ideal) of older people and their caregivers
who benefit from enhanced ED care. As researchers and educators, we value
further still what these perspectives provide as we develop training materials
and a repository of data for changing clinical practice from the textbook to
the bedside. The geriatric ED guidelines developed in 2013 and endorsed by the
American College of Emergency Physicians, the American Geriatrics Society, the
Emergency Nurses Association, and the Society for Academic Emergency Medicine
offer a compelling case in point.5 Among several salient examples,
the guidelines provide evidence-based and feasible cognitive screening tools
for older adults with protocols to ensure more geriatric-focused evaluations
for current and future ED or other care visits.5

Beyond the Geriatric
Medicine Advisory Council, we also have worked to catalyze a culture of
person-centered care across the GEDC. The institutional, organizational, and
individual partners with whom we already work—as well as those we hope to
recruit—have demonstrated a unique sensitivity to patient perspective. Many
have their own important links to patient advocacy champions, and all have
multiple stakeholders, including patients and administrators, who are aware of
the high-priority institutional need for improved care of older people. They
all now are working to ensure those voices are integrated into their own health
system’s GEDC-based plans. Those attributes must remain at the heart of
who we are and what we do through the work of the GEDC nationwide.

Proactive health systems
such as our GEDC partners know that the future of health care requires bold
approaches to (1) valuing older adults as individuals, (2) addressing our
unique needs as we age, and (3) providing the best care and support possible.
Regardless of the space, place, or context for delivering that care, it can
only begin by recognizing patients as people, including and perhaps most
especially when those people live with multifaceted conditions such as AD and
dementia. The reward for that person-centered approach is a health system that
can be responsive to individual needs and priorities, ideally while also
helping to improve our care quality and reduce our care costs.6

That promise
notwithstanding, the devil remains in the details. The National Academy of
Medicine, formerly the Institute of Medicine, estimates a 17-year delay before
just 14% of research or guidelines are incorporated into routine bedside care.7
GEDC leaders developed geriatric core competencies for emergency medicine
trainees that now appear on credentialing examinations, but research and
traditional medical education alone are inadequate strategies to improve care.8,9
The GEDC approach incorporates implementation science to accelerate the uptake
of the geriatric ED guidelines by health care systems, an approach that depends
upon representative patient and family voices.10,11 AD advocacy
groups have already expressed interest in helping to improve emergency care as
a broad strategic priority, but linking that enthusiasm institutionally
to patient perspective individually is a challenge not limited to the
ED. Engaging patients and families as sustained partners in the GEDC with the
deployment of geriatric emergency care models remains a core objective—one we
continue to explore as we bring the principles of person- and family-centered
care into the GEDC design.

There are, indeed, as many questions as answers in this early
stage of our work, but coalescing experts (and we count patients and caregivers
among that cohort) is an important first step, and one we are heartened to see
expressed so thoughtfully by a reader vested in our efforts.

Saturday, March 31, 2018

It’s been two years since Clare passed away.Overall, I think I am doing okay.Not great ... but okay.I’ve made progress with most parts of my life
as an AD widower ... but not with all parts.On 10/17, in Personal Blog #4, I wrote that “I expect some sadness will
always remain within me, and I also expect some tears at times.But I will no longer experience life with
gut-wrenching feelings of pain/guilt and lingering depression due to losing
Clare to AD.No more.I am now finally moving on with the rest of
my life.”

When I wrote those words 6 months ago, I genuinely believed
that I was ready to fully move on with the rest of my life. But I was wrong. I wasn’t ready.

It’s not that my life hasn’t been better during these past 6
months.My life has been much
better.But, despite the absence of lingering
depression, I haven’t really moved on yet to add more happiness to my life. And that is probably because I am continuig to spend most of my time at home ... alone.

I’m out
of the house almost every day for bowling leagues, to exercise, to do food
shopping, and to occasionally eat out by myself or with friends. But the desire to leave my house to do things I
used to enjoy doing with Clare ... such as going out to see a movie or traveling
to explore new places ... seems to be gone.

I’m a
homebody, much as I used to be with Clare.We enjoyed many nights just holding hands and snuggling at home while watching
a TV show or movie.Staying home is my
comfort zone.But staying home by myself
can sometimes be very lonely.To remove
some that loneliness, I’ll need to move out of my comfort zone.

I wanted to sample an online dating site earlier this year, but
I cancelled my subscription within minutes because I felt so uncomfortable.It seemed so shallow to screen women solely by
their looks. My best friend urged me to reconsider
online dating, however, saying that I’d first have the opportunity for email
exchanges and phone conversations before meeting in person with anyone I met
online. Now that I know this, I think I
will feel more comfortable about trying to meet a woman online.

I turned 71 a few months ago and can reasonably expect to live
another 10 or 15 years ... maybe more.That’s
a long time to feel lonely. Clare and I
were incredibly lucky to have experienced a very rare relationship ... a deep, passionate
love that lasted fifty years ... and Clare will always be with me in my heart.But Clare also wanted me to find “continued
happiness” after she was gone.

I may not be lucky enough to meet a woman who can provide me with
that continued happiness, but I want to try.However, even if I never meet another woman who can bring me more happiness
and remove some loneliness, I now know that I will still be okay. But I’d like to see if I can be better than
okay.

Friday, February 16, 2018

In my
opinion, no responsibility is more important for administrators at any
long-term care (LTC) facility than staff supervision. The best and most
evidence-based strategies, programs, and interventions may be used at a
facility, but if the frontline staff are not following the prescribed
procedures and protocols, these endeavors will not succeed, and quality of care
will decline. Supervisors and directors need to establish their behavioral
expectations and ensure that all staff are implementing policies, rules, and
standards properly each day. The only way to guarantee this is happening is to
make staff supervision the number one priority.

As a
dementia care advocate and a past caregiver for my late wife, Clare, who was
diagnosed with Alzheimer disease and eventually went to live in a LTC facility,
I have experienced both the highs and lows of LTC staffing and care for
dementia patients. I believe that there are generally two main reasons for
occasional instances of less-than-outstanding care in otherwise outstanding LTC
facilities: lack of sufficient staff training and absence of ongoing
supervision and evaluation of staff. I would make the following suggestions to
LTC administrators and supervisors in facilities.

Ensure
staff are properly trained and receive ongoing training

For
excellence to be the norm in any LTC, ongoing staff training and retraining
must be provided, and evaluation of staff must be the highest priority. Staff should
be periodically reminded of the high standards and expectations set for them
and understand that they will be evaluated when it comes to implementing those
standards. Resident care plans should be implemented appropriately,
consistently, and with genuine care—not just during the shift when the unit
supervisor is present but during the other 16 hours of the day as well.

This
may require hiring more supervisory personnel or paying stipends to other
certified personnel to shoulder this supervisory responsibility.

Make
sure there are enough supervisors to observe and evaluate personnel

One
major problem for LTC facilities is simply the 24/7 work schedule and lack of
24/7 supervisory personnel. When I was a principal, I was able to supervise all
staff during my workday—even if that workday extended to 10 or 12 hours. In LTC
facilities, dementia patients receive care 24/7, but rarely is there a
supervisor present 24/7. There are supervisors present in the facility, but not
in the dementia unit itself. One nurse or aide in the dementia unit may be
designated as the person “in charge” during the absence of a certified
supervisor, but that nurse or aide is not usually expected to supervise or
evaluate other unit personnel.

For
example, in the very early morning or late evening hours when aides are getting
residents washed and dressed, undressed, administering medication, and doing
various other activities with them, how can management be sure that their high
standards and expectations for care are being met? The short answer to this
question is they cannot. They cannot be sure if they are not personally there
to supervise staff at such times.

Remain
vigilant about how personnel care for dementia residents each day

One
aspect of life in a LTC facility is that in any given 24-hour day, a
caregiver’s loved one will be seen by many different doctors, nurses, aides,
and therapists. After each 8-hour period, there are usually shift changes with
different personnel responsible for resident care. Fortunately, my experience
as a caregiver/advocate was very positive most of the time. However, even in
Clare’s excellent LTC dementia units, there were occasional incidents of
insufficient, unsatisfactory, or complete lack of care. Some employees always
treated dementia residents lovingly and with a smile; others were sometimes
rude or indifferent. What bothered me most, however, was that their supervisors
always seemed surprised when I brought matters of unsatisfactory care to their
attention.

As a
retired public school principal, I am very much aware of how paperwork,
meetings, and bureaucratic realities can easily keep administrators chained to
their desks for long periods of time. However, LTC administrators must view
supervision of staff as their single highest priority and spend the largest
share of their time directly supervising employees. During many of my daily
visits to see Clare, whether in her ALF or NH, there were times when no
supervisor was ever present. Supervisors should try to find more time to
supervise staff on a daily basis to determine if any personnel issues need to
be addressed.

Dr
Vann writes a bi-monthly Commentary blog column for the Annals of Long-Term Care journal, one
of the brands housed on the Managed Health Care Connect website. He
has also written frequently for caregiver magazines, other medical
journals, and major newspapers. After his wife, Clare, was diagnosed with early
onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness
of Alzheimer’s and to help fellow caregivers. You can read more than 90 of his
other articles about Alzheimer's at www.allansvann.blogspot.com. If
you would like Dr Vann to respond to questions or comments about this article,
please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, February 16, 2017. Access online only

Wednesday, November 29, 2017

According to the latest available mortality data from the Centers for Disease Control
and Prevention (CDC), in 2014 there were 93,541 deaths in the United States due
to Alzheimers disease (AD), making AD the 6th leading
cause of death in this country. However, the CDC also acknowledgesthat this number of reported
deaths due to AD is actually much larger. “Dementia, including
Alzheimer’s disease, has been shown to be underreported in death certificates
and therefore the proportion of older people who die from Alzheimer’s may be
considerably higher.”

Indeed, a study of 2566 people aged 65 and older,
funded by the National Institute on Aging (NIA) in 2014, concluded that deaths
attributable to AD far exceed the annual numbers reported by the CDC, “notably
5 to 6 times higher. Our figure suggests that AD may be the third leading cause
of death after heart disease and cancer.” Citing more than 20 years of
previously reported research, authors of this study also found that, whereas
death certificates may correctly list the immediate causes of death on death
certificates, “dementia is often omitted as an underlying cause. It is well
documented that AD and other forms of dementia are underreported on death
certificates.”

Omitting AD as a
significant factor contributing to the death of their AD patients, even if
unable to ascertain that AD was directly related to the immediate cause of
death, is a tremendous disservice for two extremely important reasons.

First, at the risk of
stating the obvious, according to the CDC,
“Quality of mortality data is largely dependent on proper and thorough
completion of death certificates by certifiers.” So if AD is not mentioned
anywhere on death certificates, AD will not be considered as a cause of death
in the CDC mortality data. Doctors and nurses should understand that if AD was
more often reported as a “significant condition” on death certificates, perhaps
our National Institutes of Health (NIH) would make AD a higher research funding
priority.

Actual NIH funding for AD was under $600 million for
fiscal years (FYs) 2012-2015, and estimated funding for FY 2016 and 2017 was
$910 million. Contrast that with NIH funding for the CDC’s top two leading
causes of death: heart disease and cancer. Research funding for heart
disease/cardiovascular disease/coronary heart disease topped $3 billion in each
of those same 6 years, and cancer received more than $5 billion for FY
2012-2015, with estimated spending for 2016 and 2017 at $5.6 billion and $6.3
billion, respectively. And those totals are in addition to separate NIH
categorical funding of $600-$800 million for research just in
breast cancer, and additional hundreds of millions of dollars in funding for
other identified cancers (pancreatic, lung, etc) in each of those same years.

Imagine how much further
along we might be in our understanding of the causes of AD and how we might
treat it effectively, or possibly even prevent or cure AD, if annual NIH
research funding for AD were at the same levels as annual NIH research funding
for heart disease and cancer. Just over the last 6 years alone, that would have
meant an additional $15-$22 billion more for AD research.

A second reason for why I
feel more doctors and nurses should write AD on death certificates is more
personal. After a 10-year struggle with early onset AD, my wife passed away in
a nursing home (NH) last year, 1 month before her 70th birthday. When I
received a copy of her death certificate, “Alzheimer disease” did not appear
anywhere on that form. “Cardiopulmonary arrest” was listed as the immediate
cause of death in Section 30, Part I. Section 30, Part II it reads: “Other
significant conditions leading to death but not related to cause listed in part
I” ... was left blank. That stunned me…and angered me.

When I called my wife’s NH
doctor to ask why AD was not listed in Part II of her death certificate, he
explained that he could not be sure that AD played any role in her death due to
her heart history. While I could certainly respect his position, I noted that
even with her 15 years of dealing with heart issues before her AD diagnosis, if
my wife didn’t have AD, she would have lived a much healthier life style during
her last 10 years. For example, she would have continued to exercise daily, eat
nutritiously, sleep well, and enjoy a relatively anxiety-free life style—a
lifestyle she was no longer able to maintain as her AD worsened.

I also reminded the doctor
that 4 months earlier, my wife’s increased anxiety and aggressive behavior
caused her to be placed in a psychiatric hospital for 21 days. Since then, she
had been taking powerful antipsychotic medication. Heavy-duty atypical
antipsychotics come with warnings of complications when
taken by people with AD because, as one study reported, “atypical psychotics
doubled the risk of sudden death from heart-related causes, most likely by
causing disturbances in heart rhythms.” But, after listening to all I had to
say, the doctor still did not see any valid reason for adding AD to Part II of
the death certificate as a significant factor contributing to her death. We
simply agreed to disagree.

When my wife was initially
diagnosed with AD, she agreed to donate her brain for research so her death
might, in some small way, contribute to an eventual discovery of a cause, or
effective treatment, or means of prevention or cure for AD. (Her brain autopsy,
in fact, revealed that “the level of amyloid plaque and the tau neurofibrillary
tangle pathology can be classified as moderate to severe for the relatively
young age of Mrs. Vann.”) Again, indicating AD as a significant condition
would have added to mortality statistics that may possibly lead to increased
NIH funding for AD research in the future. This would have been another way in
which my wife’s death may have contributed to a better future for others.

The medical profession has
years of research supporting the conclusion that AD “contributes to death
insidiously over the course of years through a cascade of events.”So
the question to ask, it seems to me, is how can doctors and nurses not list
AD as a significant condition on death certificates for AD patients?

I think that the 2014 NIA study had it right: “Multiple factors may
contribute to death in the elderly, some proximate and some distal. The
elimination of any one of them may allow the individual to live longer.”

Until I read convincing
research to the contrary, I will continue to support the conclusion of that NIA
study that the elimination of AD may have allowed an individual to live longer.
In my opinion, this is reason enough for AD to be listed in Part II of death
certificates as a significant condition contributing to death, even if not
related to the immediate cause of death.

Dr Vann writes a monthly
Commentary blog column for the Annals of Long-Term Care journal,
which is one of the brands housed on the Managed Health Care Connect website. He has also written frequently
for caregiver magazines, other medical journals, and major newspapers.
After his wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr
Vann made it a point to increase public awareness of Alzheimer’s and to help
fellow caregivers. You can read more than 90 of his other articles about
Alzheimer's at www.allansvann.blogspot.com.
If you would like Dr Vann to respond to questions or comments about this
article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, online only, on November 29, 2017. Access commentary at: https://www.managedhealthcareconnect.com/blog/completing-death-certificates-patients-alzheimer-disease

Friday, November 17, 2017

Good afternoon! Regardless of where you are in the caregiving
process, I hope that something I’ll say today will be helpful to you.

I was asked to address a
two-part question: What was it like to be in my shoes as an Alzheimer’s
caregiver, and given that experience, what recommendations do I have for other
Alzheimer’s caregivers.

First, a little
background: I’ll be 71 years old next
month. My late wife, Clare, and I had
what we often described as a fairy tale marriage. Clare died 19 months ago, one month shy of
her 70th birthday, and 2 months shy of our 49th
anniversary. She battled Alzheimer’s
disease for nearly 10 years. I was her
24/7 caregiver at home and then served as her part-time caregiver when
she was in assisted living, a psychiatric hospital, a regular hospital, and finally
in a nursing home. I started writing for
publication out of frustration while watching Clare being misdiagnosed, in my
opinion, for nearly 3 years. She was treated
first for stress, then anxiety, and then for depression when I was already
convinced that, even though only 60 years old, she was already in the early
stages of young onset Alzheimer’s.

So, what was my experience like
as an Alzheimer’s caregiver? It was probably
very similar to many of your experiences.
My life was one of non-stop daily stress, with much sadness and anxiety,
often accompanied by periods of mild and/or serious depression, along with
intense feelings of doubt, guilt, frustration, and many other emotions. Similar strong emotions often result in many
caregivers taking anti-anxiety or anti-depressant medication, sleeping pills, meeting
regularly with therapists, or experiencing dramatic weight gain or loss. In my case, stress drove me to my comfort
foods. I gained nearly 100 pounds during
those 10 years, and it’s only been in the last year that I’ve been able to
start taking off some of that weight. I
also developed eczema on my face.

As many of you already know,
helping a loved one with Alzheimer’s just with the activities of daily living ...
basic hygiene, dressing, eating, etc. ... becomes progressively more difficult. Caring for a loved one who is constantly confused,
no longer remembers your name or who you are, or who can occasionally become aggressive,
is emotionally painful. When Clare was placed
in an assisted living facility, or admitted to hospitals after various falls, or
had to spend 3 weeks in a psychiatric hospital when the assisted living
facility could no longer handle her ... and then, finally, when she was placed in
a nursing home ... I still served as her sole caregiver for several hours each
day.

But caregiving was then no
longer my primary role ... my role had morphed from primary caregiver to primary
care advocate, making sure that she was being treated properly each day. But that new role was also incredibly stressful. Even though Clare was in excellent facilities,
many staff members were not sufficiently motivated, educated, or trained to
consistently provide proper care, and that led to many meetings with administrative
staff.

There is also a tremendous amount
of financial stress faced by most caregivers.
Unless one qualifies for Medicaid, is very wealthy, or is lucky enough
to have outstanding long-term health care insurance and prescription drug
coverage, caregiving costs can be astronomical.
Again, as I’m sure many of you already know, for someone with
Alzheimer’s here on Long Island, assisted living facilities can easily run
between $7-$10,000 per month ... or more ... and nursing homes will charge about
$15-$18,000 per month ... or more. 24/7 home
health aides will cost about $15,000 per month ... or more. Caregiving costs can drain not just your
loved one’s bank account, but also the retirement life savings that you’ll need
as the surviving caregiver.

Once Clare entered assisted
living, I suddenly had to deal with daily loneliness and enormous life style
changes. Going to sleep all alone in bed
those first few nights after placement was painful and lonely beyond words, and
living alone for the first time after so many years of marriage brought incredible
sadness. I felt that I needed to be with
Clare every day, so I visited her daily for 4 hours and I also took her out for
longer periods a few times each week. At
a certain point, facility social workers, observing my stress, suggested that I
not visit so often. I tried doing that
for a week or two, but I missed not seeing Clare so much that I went right back
to visiting her daily.

One article I wrote during
that time was titled, “An Alzheimer’s Spouse, Married Yet Widowed,” because I truly
felt both married and widowed at the same time.
I loved being with Clare each day, even when she no longer knew who I was
or that we were married. But many days
were extremely painful. We would be
cuddling on a couch in the facility lounge, I’d tell her I loved her, and she’d
say to me, “I love you too ... but can you please help me find my
husband?” It is no surprise to me that studies
consistently find that caregiver stress is a significant factor contributing to
caregiver mortality.

One person in my Alzheimer’s
support group said that caring for her husband was “grief on the installment
plan.” I couldn’t agree more. I experienced what psychologists refer to as
“anticipatory grief” for so long that I didn’t expect Clare’s death to hit me
as hard as it did. But I was very wrong. Her death hit me very hard. But, fortunately, last month I was able to
post a personal blog on my website titled, “Finally Moving On With the Rest of
My Life.” I still miss Clare every
single day, but that persistent daily depression and horrible gut-wrenching
pain and anguish is now gone. I know
that there will still be times of immense sadness, along with many tears, but at
least I have finally climbed out of my black hole.

That’s an overview of how
life was for me as a caregiver. With
respect to tips for fellow caregivers, I’d like to offer some revised excerpts
of another one of my articles, “5 Steps for Alzheimer’s Caregivers.”

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Once a loved
one receives an AD diagnosis, there are five actions that caregivers and their
loved ones should take as soon as possible.

1. Meet with an eldercare
attorney. The attorney will
review and/or prepare necessary end-of-life documents ... wills or trusts,
living wills, health care proxies, and durable power of attorney. Discuss long-term health care options. If you have long-term health care policies, review
the provisions together. Also, ask the attorney
to review your current financial situation to determine if any assets in your
loved one's name, or in joint/custodial ownership, should to be moved solely to
your name.

2. Meet with a certified
financial advisor.You and your financial
advisor should discuss how to preserve, protect and grow your current income,
investments, and other assets, and discuss plans for how you will pay for long-term
care.

3. Discuss long-term care
options. What will you do if no longer able to care
for your loved one at home? Does your
loved one prefer to stay at home for as long as possible, or prefer to be in an
assisted living facility or nursing home? What do you prefer? If not discussed previously, now is the time
to have these discussions to insure your loved one's input and allow some lead time
to visit facilities if your loved one will not be remaining at home.

4. Educate yourself at
responsible websites. Major hospitals such asMayo ClinicandJohns Hopkins, and organizations such as theAlzheimer's Association, have websites with lots of helpful information. There is also a wealth of excellent information
at government sites sponsored by the National Institute on Aging and the
National Institutes of Health.

5. Join a support group.Try to find a support group that meets solely for
caregivers in your position ... for example, just for spouses, or just for children.
Such groups can focus more sharply on common
issues. But if you cannot find such a
group, joining a mixed group is better than no group at all. Try to find a support group meeting weekly, but
a group meeting bi-weekly or monthly is better than no group at all. Good support groups can provide many helpful
suggestions and emotional support from fellow caregivers who "get it.”

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If I wrote that same article today, however, I would add 2 more
actions that caregivers should take:

Number 6. Check out websites maintained by other
caregivers. One or more may provide you
with helpful support and guidance. I
don’t promote my personal website with advertising, but caregivers still find
me because but my site gets more than 1000 visitors every month. Many caregivers read my articles there, not
in the journals, magazines, or newspapers I write for, and email me with comments
and questions.

Number 7. If you have planned to take any trips with
your loved one a year from now, don’t wait that long. Take those trips now or in the next few
months because your loved one may not be able to travel a year or even 6 months
from now.

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Caregivers who act quickly on the recommendations I’ve offered
today will be in better shape to cope with what lies ahead.So wherever you are on that caregiving
continuum, if you haven’t already done so, please meet with an eldercare
attorney and financial advisor, discuss long-term care options with your loved
one, educate yourself about the stages of AD, join a good support group, check
out some websites maintained by other AD caregivers, and take whatever trips
you had planned to take with your loved one sooner rather than later.

This concludes
my prepared remarks, but I am happy to answer any questions you may have. Hang in
there, please. Thank you.